Clinical Translational Core

临床转化核心

• 批准号: 9228907
• 负责人: JOHN A. COLOMBO
• 金额: $ 15.85万
• 依托单位: UNIVERSITY OF KANSAS LAWRENCE
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-09-22 至 2021-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9228907
• 关键词: Academic Medical Centers; Administrator; Adult; Advocate; Age; Autistic Disorder; Behavioral; Child; Child Development; Child health care; Childhood; Cities; Clinic; Clinical; Cognitive; Communities; Consultations; Databases; Development; Developmental Delay Disorders; Developmental Disabilities; Diagnosis; Diagnostic; Down Syndrome; Electronic Health Record; Event; Fragile X Syndrome; Funding; Geographic Locations; Goals; Healthcare; Hospitals; Housing; Human; Human Resources; Individual; Infant; Institutional Review Boards; Intellectual functioning disability; Kansas; Laboratories; Link; Maintenance; Mental Retardation and Developmental Disabilities Research Centers; Mission; Narration; Parents; Participant; Patients; Pattern; Phenotype; Population; Prevention; Process; Rare Diseases; Records; Recruitment Activity; Registries; Research; Research Personnel; Research Project Grants; Research Support; Resources; Rett Syndrome; Sampling; School-Age Population; Schools; Science; Scientist; Services; System; Translational Research; Universities; University Hospitals; Work; age group; autism spectrum disorder; base; cost effective; design; experience; genetic information; high risk; meetings; programs; prospective; repository; school district; success; tool; translational study

The Clinical Translational Core (CTC) of the Kansas Intellectual and Developmental Disabilities Research Center (KIDDRC) seeks to directly serve and facilitate translational research functions within its portfolio of projects. The CTC is designed to meet the needs of the work in those research themes by centralizing, integrating, and standardizing a set of functions that will allow KIDDRC projects to recruit well-characterized participants for its portfolio of human translational studies in an efficient manner. While these services will facilitate work by investigators already conducting research with human participants, they will also be extremely valuable to basic scientists who have not previously conducted research with human populations, as they provide a means for identifying individuals with Fragile X, Prader-Willi, and Rett Syndromes as well as capacity for the deep phenotyping required for supporting research on IDD subtypes and rare disorders. The objective of the CTC is to provide high-quality, cost-effective support to KIDDRC research programs in the recruitment of well-characterized participants with IDD and controls. Given the KIDDRC portfolio, the CTC emphasizes recruiting pediatric samples, but we also provide capacity to recruit adults with IDD. To achieve this, the CTC has established the goal of providing KIDDRC PIs with greater access to potential participants and with ongoing support with tools to facilitate recruitment and retention of individuals with IDD into their studies. This objective is being met in several ways. First, the CTC will provide KIDDRC investigators with access and assistance in identifying potential research participants through four registries: (1) an integrated data repository linked to electronic health records at KUMC, as well as to other regional databases that access records of individuals with IDD; (2) continuing to build a registry based on a regional clinic to which children are referred for a potential diagnosis of autism spectrum disorders (ASD) or developmental delays (this registry will be integrated with the KUMC repository); (3) a registry of facilities that house, advocate for, or otherwise serve individuals with IDD across Kansas and 14 other states derived from a partnership with the Kansas University Center for Excellence in Developmental Disabilities (UCEDD); and (4) centralization and maintenance of a registry containing information on typically-developing (TD) infants and children that has been used to support normative research on developmental science. The core will also provide support for investigators needing assistance with human behavioral phenotyping of IDD conditions, by assisting investigators with establishing and maintaining partnerships with school districts in Kansas City-Lawrence-Topeka corridor, and by sponsoring investigators’ presence and visibility at community and commercial events targeted to specific populations and age groups.

堪萨斯智力和发育障碍研究的临床转化核心（CTC） 中心（KIDDRC）旨在直接服务和促进其投资组合中的翻译研究职能， 项目气候技术中心的目的是满足这些研究主题的工作需要， 集成和标准化一组功能，使KIDDRC项目能够招募具有良好特征的 参与者以有效的方式进行人类翻译研究。虽然这些服务将 促进已经与人类参与者进行研究的研究人员的工作，他们还将 对于以前没有进行过人类研究的基础科学家来说， 它们提供了一种鉴定脆性X染色体、普拉德-威利综合征和雷特综合征患者的方法， 支持IDD亚型和罕见疾病研究所需的深度表型分析能力。的 CTC的目标是为KIDDRC的研究项目提供高质量、高性价比的支持， 招募具有良好特征的IDD和对照参与者。鉴于KIDDRC的投资组合，CTC 强调招募儿童样本，但我们也提供招募成人IDD患者的能力。实现 为此，反恐委员会制定了一个目标，即为KIDDRC的项目主管提供更多接触潜在参与者的机会 并不断提供工具支持，以促进招募和留住缺碘症患者， 问题研究正在通过几种方式实现这一目标。首先，反恐委员会将向KIDDRC调查人员提供 通过以下四个登记处获得并协助确定潜在的研究参与者：（1）综合登记处 与KUMC的电子健康记录以及其他区域数据库链接的数据存储库， （2）继续建立一个以地区诊所为基础的登记册， 被转介为自闭症谱系障碍（ASD）或发育迟缓的潜在诊断（该登记将 与KUMC存储库集成）;（3）容纳、倡导或以其他方式服务的设施登记册 通过与堪萨斯大学的合作，在堪萨斯和其他14个州获得了IDD患者 发展障碍卓越中心（UCEDD）;以及（4）集中和维护一个 包含典型发育（TD）婴儿和儿童信息的注册表，用于支持 发展科学的规范性研究。核心还将为需要的调查人员提供支持 通过协助调查人员建立IDD状况的人类行为表型， 并与堪萨斯市-劳伦斯-托皮卡走廊的学区保持伙伴关系， 赞助调查人员出席针对特定 人口和年龄组。